Epilepsy - college & university

Here young people talk about their experiences of studying at college or university, the impact epilepsy had on studying and what helped them in their studies.

Studying and courseworkSeveral young people we spoke with were either studying at university or at college. A few had found getting into university relatively easy but several had struggled to find a suitable course. Some said that, partly because of the problems caused by the epilepsy or the medication (for example concentration and memory problems, general disruption caused by frequent seizures), their A-level results hadn't been good enough for them to get into university and they'd had to modify their plans.

Rachael is 25 and full-time student nurse. She is in a relationship and lives in a shared student house. Ethnic background / nationality' White British.

I had this interview at one of the universities I'd been offered a place at. I went for the interview, one of my main concerns was sort of like, 'I have epilepsy, am I gonna be okay?' 'Cos I knew that I had to go for a health check and I was just like, 'Oh god I hope it's all gonna be alright.' So I asked at the interview and they were like, 'Oh you'll have to go for a health check, you know so we can't really say anything but as far as we're concerned we're happy to offer you a place.' I was like, 'Yes' and it's quite nice actually because even though there's all this gone on, it sort of like made a really good reason to go to it, 'Why do you want to become a nurse?' And I just had all this like, so I said, 'I feel like I need to give something back, I feel like you know there's a lot of nurses out there that don't really know, are not very empathetic, and I just feel like I really want to make a difference and I feel like I could understand how people feel.'

I was like, 'I would really want to go and specialise in epilepsy and, and 'cos I think it would be really great to sort of like pass this information back to people who don't really understand what's going on. It would've helped me I know when I was going through everything.' They were just like yeah, we'll definitely take you on; it's great, all from our end. The day came for my medical, I went for the medical, discussed it with the doctor, and he says, 'cos I'd filled out the form and had everything written up before this episode where I'd had my last fit. Where I hadn't like had a fit in a while and he asked me, he says, 'So is this still the status then? You haven't had a fit in a while?' And I just, you know I was just thinking on the train up there, thinking should I say something, or should I lie, 'cos I know it's gonna affect my chances but I was honest and I said, 'Yeah, actually it's really sad because I had one fit the other week but it was under the weirdest circumstances and it was probably brought on by something quite stressful.' And he was just like, 'I'm really really sorry, but I can't actually say,' he says, 'I'm not gonna say that we're not gonna allow you on the course,' he says, 'It's just very difficult, you have to be pretty well controlled before we let you on the course.' He says, 'What I reckon you should do is go back to your neurologist and say you know like I'm on this dose, but I need to be totally controlled because I still have the occasional seizure.'

Occupational Health check came and she was like, 'Oh it's got to be a year before you were.' I think it had been like eight months or so, from when it was December, it was March that I'd had the last fit and it was in the December I was going, going for my final Occupational Health check, before I was starting the course in January. And they said oh you actually need to be seizure free for a year. Which was like, 'Oh here we go again'. And I said, well it's nearly a year [laughs]. And she was like, do you get a warning beforehand? And things like that. 'Oh yeah I do, quite, every single time. Yeah like funny hand movements.' And she was just like, 'That's a plus. Because at least you can get yourself somewhere safe so if you're working on a ward or something.' I said, 'Oh yeah, yeah definitely, I do that anyway.' She said, 'You know your triggers' and she said, 'You seem like you've become quite an expert at it,' and I was like, 'Yes, I guess I have actually."

The Disability Discrimination Act (DDA) protects people with disabilities, including epilepsy, from being treated unfairly. The DDA applies to many areas of life, and this includes places of education (school, college and university). For people with epilepsy this means that their school, college or university can't refuse to take them 'just because they have epilepsy'.

For some individuals, talking to the college or university can help to make sure they get the right sort of support for them. This may include looking at what that person's epilepsy is like, how it affects them and their school work, what adjustments can be made to make education easier for them, and might include risk assessments. This can help to ensure that students with disabilities get the same opportunities as other students.

Studying was a challenge for many young people we spoke with and some felt that, compared to other students, they had to work harder to achieve the same results. One woman, who did a degree in health and social work at college, said it was really frustrating to 'put in about 200% and only get about 75% out of it'. Many found the medication side effects - tiredness, difficulty concentrating, problems with short-term memory - the biggest challenge to their studies and something other people didn't always appreciate. One man studying engineering said:

“Concentrating for so long on something, it's something people don't really appreciate if they don't have the illness. But if you've got it, you can understand that such a minor thing can play quite a big role, just going to a lecture and feeling really tired after twenty minutes because you have to focus your energy so much.”

If seizures were poorly controlled epilepsy itself could also be disruptive. People who had epilepsy diagnosed when they first started university, found it hard to come to terms with the diagnosis, emotionally and practically.

Clair is 22 and a full-time support worker. She is in a relationship and lives together with her partner. Ethnic background / nationality' White British.

I didn't really make many friends because it was difficult and my flat wasn't, people I was living with weren't the most understanding people. I don't think I'd have got on with them very well even if this hadn't happened. But a lot of people on my course and people in my actual house, 'cos we had flats in the house, they were good and there were always people looking out for me but it was difficult because the people I actually lived with weren't very helpful really so. But I made friends, I did make a few friends and they're still my friends now and they're really stronger friends than a lot of other people I (met) at Uni. But it did make it quite difficult especially starting a new course and the studying, it meant that a lot of my background study was sort of the basis of the rest of the course was from those few weeks and months and, I sort of didn't really remember [laughs] much about it so it made the rest of it quite difficult.

So that was difficult but I also had memory problems sort of to begin with but I actually went to the Dean of Students at the Uni because on placement it was brought up, quite a lot on my placements by my supervisors that I had memory problems and that I needed to address them. and the Dean of Students were really supportive and gave me a lot of tactics to sort of address it and I feel now that my memory isn't really that big a problem to me. And that's probably a mixture of the fact that I've had help and also the stress has sort of really been removed as time goes on so. But at the time that was difficult because and it meant I couldn't remember anything and so, it was difficult. But in the second year I kind of picked it up and the second and third years have been a bit easier so, but still, missing that sort of basis makes it a bit more difficult to build upon but I've slowly built it up and my housemates have been really good because they've sort of given me the support and helped me to pick it up and if I've got a problem they'll go over it with me. So yeah that's been, it's been alright.

Things that helped
People we spoke with got a lot of practical help from their university or college to support them in their studies. The disability office at most people's universities had helped a lot, but some people had to look for extra help themselves and felt that help and support should be more readily available. Disabled students' allowance had enabled several people to get free equipment to support their studies. Many got a laptop so they could work flexibly on their own computer from home and a digital recorder to record and listen back to lectures when revising.

The disability support office put me in touch with the people who can fund the disabled students' allowance from my LEA [Local Education Authority] and, from them I've been given quite a lot of equipment. I've been given a laptop, and a printer and a digital recorder so that I can record my lectures which has been incredibly helpful 'cos it means that if my concentration is lapsing I don't have to worry about it, and then when it comes to revising I can go over it and listen to it, and listen to things that I won't have remembered. The computer is great because if I do get a seizure, and if I'm not well enough to go to university, at least I can be e-mailed things, and things like that really. So yeah, I've been quite fortunate that I've got that equipment from the university.

A couple of people had been assigned note-takers, who could take notes when they felt too tired at lectures or too ill to attend. One woman with photosensitive epilepsy received all the lecture slides printed out, so she didn't have to follow PowerPoint-presentations on screen which could trigger her seizures. Another woman was allowed to copy books for free at the library and was also given a book allowance so she could buy her own course books. Because medication made her tired during the day but often awake at night, these arrangements allowed her the flexibility to work at home and at a time that suited her, so that she had a fair chance to do her best.

Holly is 26, single and lives on her own. Ethnic background / nationality' White British.

So, I did go and see the disability co-ordinator and I did apply for my disabled students' allowance, and I did get that, and I did get the swanky computer and the nice posh chair. And they did things as well that I didn't even know that they would do, so they did things like, they gave me a huge book allowance, so I could buy all my books, so I didn't have to go the library. Because of the medications that I took, sometimes I'd be really really tired during the day but then be like wide awake at night, but then the library wasn't open [laughs]. And I couldn't study when I was able to study, or you know if I'd had a fit and that had wiped out a day, you know I still needed to catch up on the work so this huge book allowance was nice.

And they gave me a librarian to work for me, not full time, I didn't do that much work, but she would, you know I would just send her like my shopping list of all the articles, the books that I needed, she would print and copy you know whatever, get a pile of them. So I didn't have to waste time accessing things, I could then maximise the energy that I had to do the proper work because they couldn't pay somebody to do the reading and the thinking for me unfortunately, they couldn't do that so that was the bit that I needed to do. So pretty much getting other people to take care of everything else meant that you know I could really focus on doing some really brilliant research [laughs].

During particularly difficult times with seizures or medication changeovers, some people found it helpful to change courses, take time out from their studies, go part-time or cut down the number of modules they were doing.

Zo' is 22 and a student and an artist. She is single and lives on her own. Ethnic background / nationality' White European.

Then I applied to [name of university], I came back, my hope was to pick up again my academic career, where I had left off. I had thought in awful powers again yeah, starting my degree in literature. But after a very difficult first term, I could see, I don't know what I expected, I could see it wasn't going to happen. It felt that my academic performance was not as it had been, that I just, I couldn't live up to the demands of a full on literature degree. So thus my conversion to the visual arts.

I express myself not through words which are not so adept as had once been my passion, yes, so I started again, and it took a lot to admit that to myself. That I for whatever reason I couldn't. I couldn't fulfill the path that I had always foreseen, but by a roundabout way I found one that's very well intended for me. So we hope, and it's only now, I must say I mean, with all of the difficulties that I'm sure we will come to, it's only now that I'm coming to regain something of my former self [small laughter] that I have a will to live and succeed again. Not being unconsciously, subconsciously suppressed, by the condition, all of the drama that went with the condition, all that I had inflicted upon my own mind privately, with the issue of having a disability like epilepsy. But I it's only in the past few months that I can look now towards a brighter future, and something that can succeed in a new way.

One man missed parts of his first year at college because of severe seizures and retook the year to catch up on the time he had missed.

Sitting examsSitting exams and being assessed is a major part of studying. For people with epilepsy, exams can be particularly challenging. For some, exam stress can trigger seizures. Revising and writing exams can also be hard because of medication side effects, such as lack of concentration, memory problems and tiredness.

Helen is 23 and works fulltime as a broadcast assistant. She is single and lives on her own. Ethnic background / nationality' White British.

When I had exams at university I didn't pass them. I can't pass exams unless they are essay questions because I just don't have, I can't remember the facts. I had a lot of exams. I can't remember kind of dates and legislation and things like that. I get the gist of it and I kind of think well have I missed out on something here, should I have been telling people about this. Is this something that I should be declaring? It's strange. I got very good GCSE results in the subject it didn't require me to pass examinations. I did very badly in my A levels, well much more badly then I was expected to because a lot of the A-levels contained exams. I mean I did very badly in general studies which everyone passes [laughs]. And it was because it was just an exam and then when it came to my degree, it was mostly course work. So I did very well apart from the exams and then in my Masters I actually failed all the exams apart from one and that was because they were factual exams and I wonder whether or not I should have told someone and that I could have had some way round it. I mean I did at the end.

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Profile Info

Age at interview:

23

Sex:

Female

Age at diagnosis:

22

Background:

Helen is 23 and works fulltime as a broadcast assistant. She is single and lives on her own. Ethnic background / nationality' White British.

There are two reasons why it's difficult in the exams and the first reason is, my memory is shocking and it's difficult to say what I can remember. But I can't remember people's birthdays. It's really bad. I can't remember when I'm supposed to go out with friends [laughs]. In fact a couple of days ago I was supposed to be going to a cheese and wine evening and someone offered me tickets for a play that I really wanted to see and I'd agreed to go and forgotten I had a cheese and wine evening, even though the person that gave me the tickets gave them to me because she had to go to the same cheese and wine evening [laughs].

But in the exams yes, the memory affects me. But then also there is the fact that under stress I have more seizures. I mean usually day to day my medication completely covers me and I'm fine, but if I'm really, really stressed out like for example I'm just before an exam or you know if something, if I've got something really, really important and I'm really stressed out, then I'm much more likely to have a seizure or at least a very strong deja vu which is pre-seizure. So before I was medicated I used to have seizures in the exams all the time. It was pretty much guaranteed, it would be half way through the exam I'd be freaking out and I would have a seizure. And of course I didn't tell anyone because I thought I was crazy and what do you tell them. Because it's so much easier now that I can say you know, I have epilepsy, because I know what it is. But before you know what it is you can't describe it.

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Profile Info

Age at interview:

26

Sex:

Female

Age at diagnosis:

18

Background:

Holly is 26, single and lives on her own. Ethnic background / nationality' White British.

My first year exams were three and a half hour closed book papers, four of them, and you didn't have any, well coursework was minimal, only one subject had a piece of coursework and that was only 20%, the rest of it, and it wasn't modular either. It was completely linear so you studied all year, and the only assessment you had was this three and a half hour closed book exam. Now that's pretty tricky when you have epilepsy because a) you can't guarantee you're gonna be conscious when the time for the exam is, and secondly the medications that you have to take generically they all pretty much have similar side effects, some of them have weird and wonderful things that you'd never anticipate, you can pretty much guarantee you're gonna be knackered, you're gonna be quite dizzy, you're gonna be sick, you're not gonna be able to concentrate and you're memory is gonna be short. So doing three and a half hour closed book papers is a pretty rubbish way of doing any kind of assessment for somebody with that condition.

Almost all the people we spoke with got extra time to do exams and were often allowed to do exams in a separate room, without the pressure of other students around. These arrangements helped to make exams a little less stressful. One woman who had photosensitive epilepsy did her exams in a separate room with the main lights switched off. Because tiredness and concentration difficulties were also a problem for some, they were allowed to take rest breaks during exams. Many people we spoke with had dyslexia and some of them got extra time for exams because of the dyslexia rather than the epilepsy.

Paddy is 21 and studying mechanical engineering at university. He is in a relationship and lives in a shared student house. Ethnic background / nationality' White British.

The university have been really good as well, helped me with everything I needed. There was no real need for me to have extra time in exams or anything, but they give me, they give me rest breaks so if I feel like that, that twitch I'm allowed to just go and sit in this other little room and they pause my exam. So that I don't, basically I can go and sit somewhere else without worrying about the fact that I'm losing time from my exam which is exactly what I need. So they're really good about it. Yeah that first term when it first happened, they were good and I suffered in some of my exams for it, and they sort of compensated for that and when it came to the end of the year and then since then they've just put me like I said in a room so I can have those rest breaks. Well basically in the first year there was the main, the person that is in charge of all the admin on my course, he had a flat mate that was epileptic, so he was really sort of like he knew, he knew what it was like and helped me a lot. When it came to dealing with the lecturers and the people that might not have been so considerate 'cos they don't know, they don't know the circumstances so, but yeah the university were really good. Really good.

One woman pointed out, though, that extra time for a closed book exam didn't always solve the problems:

“They decided that because, it [doing exams] would take me a lot longer, that maybe three hours wouldn't really work, so I would just have extra time. If you have extra time but you can't stay awake for more than three hours, and you can't concentrate, being given the option for four and a half hours or something isn't actually going to help you.”

Eventually she was allowed to do exams from home, so that she could work on them the whole day and take breaks and rest as needed.

Most people were really happy with the support and help they'd been offered and felt that they were entitled to extra support. A couple of people described themselves as 'stubborn' in insisting that they didn't want any extra help or to be seen differently because of their epilepsy.

Holly is 26, single and lives on her own. Ethnic background / nationality' White British.

I did struggle during my first year of the course because I was still fitting quite a lot, and I was also had this thing in my head that just because I was going to be unwell quite a lot of the time, I wasn't just going to be unwell and then study. No, no, that wasn't the life that I was going to lead, the life I was going to lead was pretty much, party and unwell, I wouldn't study, which was a really ridiculous attitude to take, quite irresponsible, don't do that kids. I don't know, and it was kind of weird as well because part of me really, really appreciated the fact that I was at university because I'd already had it taken away from me, so I was really determined to make the most of it, and not want to stuff it up, and I think that's why I kind of socialised so very well because I didn't wanna lose that as well. But I was I think part of me that took quite a long time to realise that it wasn't going to be taken away from me, 'cos I think part of me just thought well what's the point, you know. They're probably gonna change their mind anyway, so maybe I won't work quite as hard, but hey it turns out I'm actually just quite good at what I was studying and despite minimum effort being put in, maximum outputs were gained, and I got really good grades, and won awards and that was nice.

But I did it all myself, and I just wouldn't accept any help and I was really stubborn and I think part of it was because I didn't want it always to be, 'Oh well you know [participant's name] is doing well but she's got epilepsy, so that means she's doing really well considering.' I didn't want any kind of special measures taken because I think I wanted to do it despite the epilepsy, and I think I didn't wanna make a fuss.

Although studying could be challenging at times, people felt studying and getting a degree boosted their confidence.

Zo' is 22 and a student and an artist. She is single and lives on her own. Ethnic background / nationality' White European.

I just had to rethink my future as far as the way it had been fixed, as in very fixed in my own mind where it was to go. I mean right now I've grown in confidence as enough to be able to think that, now I can grasp the future like anybody else, I feel as though I'm able to live like anybody else, just consciously aware, yes of this epilepsy now, but I don't feel limited anymore. I don't feel bound. I feel as though once again, the traveller that I am, the world is open to me and that is where my art will take me. Yes I'm going to finish on this BA in a year's time, I hope actually to be, I'd love to be accepted into the Prince's School of Drawing, an intensive year here in London studying. After that some time painting for my own, just to define my directive, just where it is that I'm going with my painting. Of course onto a Masters at some point. I need to research into, into what department it would be, I'm not limited by the boundaries of this country, and eventually I wish to, the British School at Rome, a residency there. But yes it's the ladder, I'm sort of on the first step of the ladder but I feel as, for the first time in a long time, I feel as though it can be achieved. We can find it.

We also spoke with a few young people with complex epilepsies and learning difficulties who attended a residential college. All of them felt that the best aspects of college were learning life-skills to become more independent and making new friends.

Simon is 21 and he lives in a residential college for young people with epilepsy. Ethnic background / nationality' White British.

What's that been like? What is it like [at college]?

It's been, I've really enjoyed myself because I've been at other schools and, since I've left school I like this place 'cos it's in the countryside and I like stuff to do with nature and like looking after animals and things. I like doing, working on the farm and doing sort of things outside. I have friends in college as well as outside the college as well. Like I have friends in my tutor group and, which I get on well, really well with, and we have like trips out together, which is like good fun to have together really. It's like you know that, when you have friends that's a good sort of thing to do and we like sort of going out to places and you know just spending time together really. Like when we're in college we spend time together, like break times and just talking to each other and asking each other about what's been going on and just catching up on things.

I've done work prep were I've done visiting stuff around the community like, if I would leave here, I would know where everything is like the doctors, the hairdressers and stuff like that. And I would know where it is and I would go to it and know how to like make appointments there myself. Like go out in the community and find it, just to like work with, work-prep. I've sort of come, I've just completed that, you know that and then I'd do on a Tuesday I have like Life Skills.

Okay what's that then?

It's where we do stuff, stuff on like healthy eating, like eating healthy things, to like sort of projects on like eating like not too much sort of chocolates, like chocolate and stuff and keep an eye on our weight.

Yeah, yeah things that are good for you.

Like making ourselves healthy meals every day.

Difficulties and obstaclesA couple of people had more negative experiences of studying. One woman had to take some time off a child-care course she was doing at college and, when she returned, couldn't catch up with the others. She had to choose whether to retake her year or fail the course. Because she failed, she now can't move on to a degree level and get work in child care. Another woman had been forced to leave a health care course she was doing at university as they considered her 'unfit' to carry out her future work after being diagnosed with epilepsy. She appealed against the decision as discriminatory but lost the appeal (see more about the DDA above and 'Resources' section).

A couple of people had found college too difficult to manage and had had to leave. This was either because of very frequent seizures or severe side effects, but was also made worse by other problems, such as depression for one man, or excessive alcohol use for another.

Starting a new college course or going to university involves meeting lots of new people. People said that it was sometimes hard to know when to tell new people about their epilepsy. Most said they told others only on a 'need-to-know-basis' and to those they were going to spend more time with, such as housemates (see 'Awareness and misconceptions about epilepsy').

Anna is a 20-year-old English literature student. She is single and lives in a shared student house. Ethnic background / nationality' White British.

I was quite stressed because it was sort of Freshers' week, it was prompting more seizures, but, that was kind of fine, I can deal with the seizures. It was more having to explain it when you are meeting sort of a hundred people in a day, two hundred people in day, so when to tell people, and it means that some people you meet you're probably not gonna see again, and so I didn't want to kind of tell them immediately. I think that's, I don't need everyone to know, but it was just kind of the people I was living with, it was quite important that I tell them. And then if I was sort of talking to people for a kind of a long time, so, you know the conversation just say, "If I seem to kind of 'go out' for a moment this is what it means", and just to try and, to make it as normal as possible. And generally they were kind of more, I had more of a reaction than I did telling it. I found that as long as I was open about it then it was fine and it wasn't a problem. But just to kind of getting the knack of knowing when to tell people, and as long as I've been open about I've never had a problem.

Many felt that people were more mature and supportive at university than they had been in school, and found social life easier than when they were younger. Those whose epilepsy was diagnosed at the start of university said they had struggled to make friends and a couple had lost some of their friends after being diagnosed (see 'Friends').